Paraskeva Miranda, Gulline Hannah, West Simone, Walsh Louisa, Tarrant Ben, Hatzikiriakidis Kostas, Morris Heather, Ayton Darshini
Department of Allergy, Immunology, and Respiratory Medicine, Alfred Hospital, Monash University, Melbourne, Australia.
Central Clinical School, Faculty of Medicine, Nursing, and Health Sciences, Monash University, Melbourne, Australia.
Health Expect. 2025 Feb;28(1):e70156. doi: 10.1111/hex.70156.
Lung transplantation improves survival and quality of life in young people with end-stage lung disease. Few studies have investigated the clinical care experiences of young people after lung transplantation.
This qualitative study aimed to explore the experiences of young people who underwent lung transplantation. Semi-structured interviews were conducted with 16 lung transplant recipients (< 25 years at transplant). Interviews were analysed to identify themes and categorize and describe the experience of young lung transplant recipients.
The themes that emerged were (1) Hope and spectre: The transplant dilemma; (2) Information delivery and comprehension; (3) Independence and navigating care; and (4) Continuity and youth-appropriate care. Findings suggest that young people have distinct care needs that consider the many parallel life transitions that occur in addition to transplantation. They value consistent and familiar teams, which nurture autonomy and independence in the context of post-transplant survivorship and highlight the importance of feeling that they can relate to the healthcare process.
The results highlight key areas where adolescent lung transplant recipients can be supported by clinicians, enabling the development of youth-friendly services that cater to this group's healthcare and psychosocial needs.
Sixteen lung transplant recipients participated in the study by completing a semi-structured interview. Two additional lung transplant recipients who received lung transplants as adolescents and one parent of an adolescent lung transplant recipient participated in a Project Advisory Group (PAG) with six clinicians representing paediatric, adolescent, and adult healthcare experience. They provided advice on research design including the development and revision of the interview guide and recruitment methods. They additionally provided feedback on the preliminary findings and outline of the manuscript. A summary of results was presented to the PAG who in conjunction with the writing group developed a list of recommendations based on the themes identified and the tenets of youth-appropriate care as set out by the World Health Organization. One lung transplant recipient was an author on the manuscript contributing to its writing and review before submission. The clinicians who participated in the PAG did not have direct healthcare relationships with the study participants.
肺移植可提高终末期肺病年轻人的生存率和生活质量。很少有研究调查年轻人肺移植后的临床护理经历。
这项定性研究旨在探索接受肺移植的年轻人的经历。对16名肺移植受者（移植时年龄小于25岁）进行了半结构化访谈。对访谈进行分析，以确定主题，并对年轻肺移植受者的经历进行分类和描述。
出现的主题有：（1）希望与恐惧：移植困境；（2）信息传递与理解；（3）独立性与护理导航；（4）连续性与适合年轻人的护理。研究结果表明，年轻人有独特的护理需求，这些需求考虑到除移植外发生的许多并行的生活转变。他们重视一致且熟悉的团队，这些团队在移植后生存的背景下培养自主性和独立性，并强调感觉自己能够参与医疗过程的重要性。
研究结果突出了临床医生可为青少年肺移植受者提供支持的关键领域，有助于开发满足该群体医疗和心理社会需求的青少年友好型服务。
16名肺移植受者通过完成半结构化访谈参与了该研究。另外两名青少年时期接受肺移植的受者以及一名青少年肺移植受者的家长参加了一个项目咨询小组（PAG），该小组有六名代表儿科、青少年和成人医疗经验的临床医生。他们就研究设计提供建议，包括访谈指南的制定和修订以及招募方法。他们还对初步研究结果和手稿大纲提供了反馈。研究结果摘要提交给了PAG，PAG与写作小组根据确定的主题以及世界卫生组织提出的适合青少年护理的原则制定了一系列建议。一名肺移植受者是该手稿的作者，在提交前参与了手稿的撰写和审核。参与PAG的临床医生与研究参与者没有直接的医疗关系。
